Calmer: Medical Events with Cognitively Impaired Children

By Melissa Hogan

Imagine a child with a rare and degenerative disease with ten specialists, four therapists, a weekly infusion, a clinical trial, and regular medical procedures. Now imagine a laughing, singing child who pretends to be a nurse to his stuffed animals, relatively untraumatized by the constant medical interventions. This is Case.

Calmer: Medical Events with Cognitively Impaired Children offers a toolbox of workable strategies described in parent, not psychologist, terms that are designed to reduce medical trauma in your special child. The strategies are drawn from the work of the author with her son Case who suffers from a rare condition called Hunter Syndrome.

• Language: English
• Publisher: Melissa Hogan
• Release date: Apr 2, 2012
• ISBN: 9781476304175

Melissa Hogan

Melissa Hogan is a lawyer by training, writer by passion, and advocate by necessity. She is the founder of Saving Case & Friends, a nonprofit foundation that supports research and advocacy in Mucopolysaccharidosis II or Hunter Syndrome, a rare disease affecting an estimated 2,000 boys worldwide. The foundation's blog at SavingCase.com, as well as Melissa's personal blog at MelissaHogan.me, have regular visitors from over 100 countries worldwide, sharing on topics ranging from rare disease research, caring for a child with special needs, fundraising, faith, and writing. Melissa is also frequent writer at The Huffington Post, The Mighty, and Rare Disease Report, in addition to the above blogs, as well as a songwriter in her spare time. Her song ALIVE, co-written with #1 hit songwriter Mark Irwin, was a finalist and the runner-up People's Voice selection in the 2015 International Songwriting Competition. She regularly speaks at rare disease conferences on topics ranging from clinical trials, patient engagement, and social media use in rare disease.

Book preview

CALMER

MEDICAL EVENTS WITH COGNITIVELY IMPAIRED CHILDREN

By

Melissa J. Hogan

SMASHWORDS EDITION

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Calmer: Medical Events with Cognitively Impaired Children

Copyright 2012 by Melissa J. Hogan

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Smashwords Edition, License Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

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Many thanks to my dear husband, my father, and my friend Jamie Fowler (another Hunter Syndrome mom who is a psychologist with great insight on these issues as well) who helped me edit and revise this book. Also thanks to my Gang of Four ladies who have offered their support in medical situations and way beyond, as well as the many therapists, child life specialists, nurses, and others instrumental in my son’s life who have endured countless questions about the best strategies to use for Case’s challenges. My ultimate thanks goes to my God who has given me rest and peace beyond measure day after day during the last three stressful years. Psalm 62:1; Philippians 4:6-7.

This book began as an e-mail and blog post in response to questions about how we handled all of these medical events, but several people encouraged me to expand it. Since those early days it has grown into the work you see and continues to help me reflect upon how we handle each new medical situation given Case’s changing cognition levels.

I hope these strategies are as helpful to you as they continue to be to us.

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CALMER

MEDICAL EVENTS WITH COGNITIVELY IMPAIRED CHILDREN

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Table of Contents

Introduction

Why Do We Need Certain Strategies?

Parental Emotion

Sensing the Atmosphere

Play Therapy

Desensitization

Visual Supports

Consistency

Timing

Distraction

Games

Communication With Your Child About Medical Events

Body Control

Switching Strategies

Conclusion

Additional Resources

About the Author

Connect With Me Online

Introduction

Meet Case. He is now five years old, but his medical journey began at birth when he was placed on a ventilator at five hours old. Many appointments, procedures, and miracles later, he was diagnosed with the rare and progressive disease of Mucopolysaccharidosis II, also known as Hunter Syndrome.

The diagnosis intensified what had already started out as a life filled with medical interventions. As a short background, Hunter Syndrome is a progressive disorder whereby the